kim

http://www.ageofautism.com/2012/03/leroy-pandas-autism-and-el-will-the-real-mystery-illness-please-stand-up-part-1.html LeRoy, PANDAS, Autism and EL - Will the real "Mystery Illness" Please Stand Up?- Part 1

dcmom, I don't know if you read the discussion here regarding nitrous oxide use? There is some concern regarding B12, folate and methionine synthesis. I'm leaving you one link, but you can read up doing a search of those key words if you think it might be a concern. I'm hoping too, that your Dentist is not using amalgam (silver) fillings? I would remortgage my home before I would allow a silver filling. Short video link below for anyone who has not been around that block. http://bja.oxfordjournals.org/content/59/1/3.extract CLINICAL ASPECTS OF THE INTERACTION BETWEEN NITROUS OXIDE AND VITAMIN B12 Video University of Calvary dental amalgam fillings tubulin inhaled vapors I wish I had some good advice. I know valium sure worked for me when I had impacted wisdom teeth taken out. It was wonderful. My oldest son didn't have any problem with Versed for teeth or GI scope, but I'll let other parents with more PANDAS specific kids comment.

bws, This is older but it touches on what your talking about http://www.vsan.org/rok-az/methylation/AutismAnswerUpdatedGutprotocol4.pdf excerpt I was listening to this today. LLM, are you familar with BH4? http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- Dr. Amy Yasko presents Assessment of Metals and Microbes as a Function of Nutrigenomic Profiling Part 1 of 2 In a different direction, I thought this info on Hilary's site regarding the sad passing of this young adult was astounding in terms of the aluminum that was found in the brain tissue that these parents managed to get to Dr. Chris Shaw in Canada. You can read the report, it's clickable in the 2nd link. When you read the circumstances surrounding the original autopsy, the fact that permission was sought to destroy the samples etc. it just seems impossible that we are talking about the protection and well being of humans. http://offtheradar.co.nz/vaccines/106-hilary-butlers-letter-to-medsafe.html HILARY BUTLER'S LETTER TO MEDSAFE http://www.beyondconformity.co.nz/_blog/Hilary's_Desk/post/Did_Gardasil_kill_Jasmine/ Did Gardasil kill Jasmine? Christopher Shaw was discussed on another thread... http://vaccinexchange.files.wordpress.com/2011/05/tomljenovic_shaw-cmc-published2.pdf Aluminum Vaccine Adjuvants: Are they Safe? L. Tomljenovic*,1 and C.A. Shaw2 Here is another suspected Gardisil injury story. The video is heartbreaking (scroll toward the bottom of the article) but I think families are willing to share these stories to encourage ANSWERS being found. We will never be able to make rational choices regarding vaccination, if we can't even get to square ONE of figuring out who may be harmed and who may benefit. http://www.renewamerica.com/columns/janak/110917 http://www.koat.com/r/23190530/detail.html http://www.koat.com/r/24432420/detail.html Alexis Wolf As usual LLM stated it very well~

similar case in PA Swissvale, PA http://www.wpxi.com/news/news/local/swissvale-woman-suffering-mysterious-illness/nJGwd/ Nikki has a comment posted after the article

Can anyone on this thread tell me if they remember their child turning orange? I don't mean the little bit of orange around the nose etc that babies get, I mean whole body? I think Melanie is the only other parent that I have heard mention it. It seems like my son turned orange shortly before he started eliminating foods. Baby foods, as in Gerber 3rd foods. I agree with others here. I would jump on this at a young age, and wish I had

Priscilla,, I'm glad that you figured that out. I found that statement to be confusing too. Looking at the rec. vaccine schedule, I think gave clarity to that statement? thenmama, If you write a book, I'll buy it. You have a wonderful writing style. I totally agree with everything that you said. I do however, wonder if the person in question is aware that her statements are inaccurate? Is she rushing to an uninformed conclusions or is it an intentional statement to discredit the whole vaccine program? I'm leaning toward the former. Also, could we be wrong about the mandating of the PPSV? I think it's generally excepted that vaccinating with the polys. vaccine can actually result in lower titers. That's why it's only recommended once for the older set (as I've said before, it's been a while since I really studied this stuff). I would find it so odd that they would actually do that, but also very strange that someone who seems to have an extensive interest in vaccines would make that sort of mistake! I haven't narrowed all of the questions down on this thread, but tetanus stands out. Before we talk about the individual tetanus vaccine, I hope you who have questions will read this and then maybe we can see what we can verify in terms of the amt. of antigen in the toxoid vaccines that are available. Just a side note, I do believe Tenpenny to be a good source for a starting point when looking at these things. Also, remember that the schedule currently looks like this- DtaP at 2 4 6 mos. again at 15-18 mos. again at 4-6 years and then 1 at 11-12 years. Depending on the age of your child, it may not match up as far as the actual vaccine that was given (i.e. my kids had a couple of whole cell DTP's). I'm also curious for the child that didn't show adequate immunity, when was the last tetanus containing vaccine given? http://www.whale.to/a/tenpenny1.html

thenmama, In the interest of fair and balanced outrage, I have to say that I have encountered many medical professionals in the last several years who have spouted info that has had no real basis or was just down right inaccurate too. A couple of examples Mercury is illegal in this state. There is no such thing as mercury in any vaccine (refused to get package insert from multidose flu vaccine..had never heard the word thimerosal) insisted we wouldn't be there if I had gotten my son his flu shot. Next day, family Dr. swabs strep positive. This child was violently ill, "Dr. uninformed," insisted it was viral flu. It got ugly enough for a receptionist to chase me down in the parking lot and ask me if I minded telling her what that was all about. Bee's are filthy animals. You need a tetanus vaccine. Tetanus used to kill hundreds of thousands of people (In the US? highest ever reported year around 560?). I've posted this one before, but it's a favorite. In regards to aluminum & thimerosal "I don't believe any of those things are in vaccines." The Dr. who started those rumors has apologized. Again, refused to look at vax insert. I've got a real problem with this fella too http://therefusers.com/refusers-newsroom/vaccine-fanatic-says-refusers-should-be-sued-by-disease-victims-chairman-of-american-academy-of-pediatrics-committee-on-bioethics-michigan-law-review/ CHOICES SHOULD HAVE CONSEQUENCES: FAILURE TO VACCINATE, HARM TO OTHERS, AND CIVIL LIABILITY Michigan Law Review Douglas S. Diekema excerpt Has he not heard of serotype replacement? Should children who contracted strains of S pneumonia that were not included in the original 7 strain vaccine, sue parents who vaccinated their child with it? Ok, now we've got a 13 strain vaccine. There are around 90 known serotypes. What's next? How about staph http://jb.asm.org/content/190/7/2275.full How about these folks http://cid.oxfordjournals.org/content/53/12/1230.full If you want to know what those "prevention strategies," might include keep reading "Opportunity," is an interesting word. "Necessity," might have made me feel a little better. Again, inaccurate and incomplete information is maddening. However, there is seems to be a lot of it around.

Priscilla, The vaccine that I believe you're referring to is probably the PCV (the series that your daughter received). That one is on the routine schedule. The one that thenmama and I were discussing is PPSV23. Honestly, I know how confusing that this can get. One of the first things that you might want to do, is to get familiar the schedule and then start researching. http://www.cdc.gov/v...schedule-pr.pdf http://www.cdc.gov/v...schedule-pr.pdf Jag, I wanted to point out that the paper that I posted somewhere here about the conjugate vaccines is a hypothesis only. Without going back and reading again, I got the impression that his idea was that by lowering the age that the conjugate vaccines were given, it may have contributed to the autism epidemic by effecting Myelin. Also, I went back to edit the post about the meningococcal vaccine. It looks like there is a new one that I wasn't aware of. Here is what I added. http://www.menveo.com/ https://www.novartis...motional_PI.pdf

OHHHH Boy, thenmama, are you or anyone else thinking of taking her to task on those comments? Can anyone from NY even confirm the statement about pneumonia vaccines? Not talking about PCV series, but mandating the PPSV? If you look at the Recommended Schedule, you can see PPSV is only rec. for high risk groups. The first one is for 0-6 the second is ages 7-18 http://www.cdc.gov/vaccines/recs/schedules/downloads/child/0-6yrs-schedule-pr.pdf http://www.cdc.gov/vaccines/recs/schedules/downloads/child/0-6yrs-schedule-pr.pdf I don't see anything like that here and I think that was revised in 2011 http://www.health.ny.gov/publications/2370.pdf

Jag, Only one of the available meningococcal vaccines is a conjugate. I think what they found with the conjugate was a longer lasting antibody response. I think, and I haven't gone back and looked this up, but it seems it was something like 2(?) years for the unconjugated vaccine. Another thing, neither of these vaccines have an aluminum adjuvant, I'm assuming because the adolescent immune system is capable of responding to the polysaccharide alone (unconjugated) or the Polysaccharide Diphtheria Toxoid (conjugated).Here's some info http://teenhealth.about.com/od/commonvaccinesforteens/a/meningitisvac.htm Brand names: There are two slightly different meningococcal vaccines available. Menactra® is one version that is commonly available, and is the meningococcal conjugate vaccine (MCV4). Menomune® is the other version that is commonly available, and is the meningococcal polysaccharide vaccine (MPSV4). http://www.fda.gov/downloads/biologicsbloodvaccines/vaccines/approvedproducts/ucm131170.pdf Menactra http://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM131653.pdf Menomune EDIT: MENVEO looks like the latest approved meningococcal vaccine. It is conjugated. I suspect the unconjugated vaccine is not going to be readily available in most practices. Do notice the warning regarding of Guillain-Barré Syndrome. Further warnings are included in the packge insert http://www.menveo.com/ https://www.novartisvaccinesdirect.com/PDF/Menveo_Full_Promotional_PI.pdf The problem that I'm wondering about, is the forcing of that type of immune response in the under two year olds, when that is not the way an infant would respond. Yes, the disease that they are vaccinating against are very real in their ability to cause illness, but what is the trade off here? Don't forget that they added that 6th DtaP to the older kids schedule too. That is an aluminum adjuvanted vaccine. I think we'll save that for further discussion tho, so I don't throw anyone into overload! My parents Dr. has an older autistic child and in not a fan of vaccines either. I had posted this on another thread, but not sure how many saw it. It just makes me ill to think that this may not to have happened to this child. I wonder if there was a family history, if those vaccines were even necessary and if anyone thought it might be a good idea to wait further out from her illness and antibiotic use. http://www.timescall.com/news/longmont-local-news/ci_19881252 excerpt

Jag, I guess "general discussion," might be the best answer. It's such a huge topic and there are so many area's to discuss, I guess it's easy to go off in a lot of different directions. The Offit & co paper really bothered me because they convince us how perfectly efficient the newborns immune system is. They tell us (I say us, but I guess that's really written more for med professionals which bothers me even more )that the part requiring a B-cell response to T-cell-independent antigens (such as polysaccharides) doesn't' work so well until about the age of 2. It would recognize a protein (and a few other things)though, so they attach the polysaccaride from the strains that are causing the problems and now the immune systems will respond because it's now T cell dependent. What he leaves out, is the fact that attaching the protein etc. to the polysaccharide is not all that was required. Those components are then absorbed on aluminum. Why doesn't he say that in the paper? I found it alarming that the pediatricians didn't seem to know anything about it. They think now (and I don't think this much was even out there when that paper was written) that alum works in this this pathway http://www.nature.com/nature/journal/v453/n7198/abs/nature06939.html I want to know if forcing this type of antibody response can indeed alter the way a child responds to to pathogens in the future? Maybe that is something you can you could ask at you appt with Dr. B. I would also love to know if there are any studies showing what antibody levels look like for kids that received Prev 7 say 5-10 years ago? I have no doubt that these Dr.s see some kind of pattern but how much of it has to do with natural exposure as opposed to vaccine induced antibodies? GOOD FOR YOU FOR ADDRESSING IT! The reponse that you got was interesting tho. Is he willing to give you a medical waiver? I've said this before, but I actually almost feel sorry for the Dr.s now. They don't have the infomation that they need, to really advise their patients either. I wonder if the abrupt response was because he didn't want to admit that he really didn't know what you were talking about?

Why this info may be important: If children under the age of 2 (roughly) can't respond to polysaccharides, I don't think the antibody response that is thought to be problematic in the GABHS would occur before that age either. I don't think that mainstream med worries about rheumatic fever, heart damage etc. in children with strep under the age of 2 who culture positive (I had a Dr. tell me that). Ok, this is something that I was working on yesterday. Maybe only a couple of people will be interested in this, but if there is even one it would be nice to have someone to talk to I'm not trying to make it seem that I have anything important all figured out, I'm just wondering if anyone can help explain the questions that I have in regards to all of this. First, before we get into the HIB/S pneumonia vaccines (keeping GABHS in mind) read these excerpts http://www.who.int/immunization/documents/Elsevier_Vaccine_immunology.pdf and about 1/3 down Now the easier stuff saved from yesterday Largely due to PM's that have asked questions, I'm going to resurrect this thread. I want to state once again that I have no medical or scientific background and I'm not trying to give anyone medical advise. Never rely on anything I say to be either complete or accurate (or anyone else..DO YOUR OWN RESEACH) so you will know how to discuss concerns with your child's health care provider. It's kind of interesting that I wanted to find something to help explain what happens right off the bat with children who recieve the Hep B (then some info on that interesting HIB and S pneumonia) birth dose. Now, keep in mind that the vaccines have changed and the schedule has changed since my kids were vaccinated and since I did a lot of my research. First, I want to use a little info provided by one of countries most outspoken vaccine advocates. Keep in mind what you read in Hilary's papers and then read this (which you will see Dr. Offit's name on). They reinforce some of her thoughts above AND give some addtional info. Pay particular attention to the paragraph with the heading Functional Differences Between Infant and Adult Immune Responses and the next one IMMUNE RESPONSE TO VACCINES BY INFANTS http://pediatrics.aappublications.org/content/109/1/124.full That is as far as I read for now (I have read this paper before) Does anyone notice what he doesn't mention in there? They talk about polysaccharides and proteins, but leave out one important element.. edit..forgot to include the link

I seriously wonder where these people are coming from. Cheri used to warn everyone who was thinking of sending their child to a TS camp that they could start a new tic or potentially have a worsening from being around all of the other children with tics. When my son was at his worst, I remember him shaking his head because he saw a horse on TV do it. I mean really these people don't know that about tics? Siegel either? Also, I find it almost ironic. When I watch those girls, their tics seem so similar, and to me, it seems that one side is affected more than the other. Different sides, but the arm flinging and the little side ways shaking of the head? My experience with tics is that they are diverse. Shoulder shrugs, wrist shaking, back and forth head shakes, I don't know....they seem to be affected so similarly. Does anyone else feel that way? I noticed the uncle from Indiana talked about that with his nephew too (looking like one side affected more than the other). I'm going to post his detailed summary of the events for his nephew in case someone else would like to read it. I know you guys will pick right up on the illness that the dad had (ear infections) and "Sams" illness and mono, the mention of the dogs being sick etc. Something that I had to wonder, is how can a child be SO ill and NOTHING show up on imaging, and all of the other tests? Is someone practicing with a new bio weapon (i am kidding there)? This just seems unreal. Sam was in band so field exposure too. Thera was in Flags Lori from Corinth was a pitcher I'm really wondering if anyone has looked into what these fields are treated with anything in common? 2012-0203-Sam Case Detail-with Alias names rev 3.pdf (will have to cut and paste can't make it clickable) Also, I noticed this posted on the flu tracker forum and it made think of something else..Colorado, Oct 6, softball field??? What is going on here? bolding mine http://www.timescall.com/news/longmont-local-news/ci_19881252 Longmont 11-year-old maintains positive attitude despite paralyzing disorder

FOX AND SIEGEL should be ashamed! DO THEY REALIZE that they put up Lori's vidoe, who was drugged (given something to sleep) when her mom filmed that. She was moving like that in her sleep. Do they know Lori is from Corinth....Not Leroy??? Do they know Lori's first video is dated Dec 18th? Are they aware that Lori's episodes started with passing out. First episode in August at a concert, then passing out again about a month later at homecomming. She only started having the movements after she was placed on Celexia? Does he understand that one other girl in Corinth has a similar condition and they were totally unaware of what was happening in LeRoy? You're Dubious that this is something other than mass hysteria Dr. Siegel????? I'm dubious that you people have enough information to be speaking about this on national TV at all. Lori made those video's to try to HELP others. That FOX would use it, to try to prove something that makes no sense and literally DISPROVES the theory that Dr. Siegel seems to be leaning towards makes me furious. http://jamestown.ynn.com/content/all_news/571741/mystery-illness-gaining-national-attention/?ap=1&MP4 http://www.youtube.com/user/rodeocowgirl131?feature=watch#p/u

I sure agree with the puzzled comments today about the irresponsible remark about PANDAS and an infection from a vaccine. It did make me think about something else that is "fuming worthy," though IMHO. I remember reading this in the PDF For all of us who have been around long enough to remember the sheer ignorance of the thimerosal scandalthe above statement is really an outlandish insult. The same studies that were HEADLINED as EXONERATING vaccines in the role of autism, kept showing an inconvient little finding. Now they may take another look at that http://www.huffingtonpost.com/david-kirby/cdc-to-study-vaccines-and_b_837360.html excerpt (bolding and underline mine) David Kirby is referring to http://www.cdc.gov/vaccinesafety/00_pdf/ISO-Final-Scientific_Agenda-Nov-10.pdf Centers for Disease Control and Prevention’s Immunization Safety Office Scientific Agenda Immunization Safety Office, Division of Healthcare Quality Promotion National Center for Emerging and Zoonotic Infectious Diseases February 2011 Might it had made a little more sense to see what other vaccines including Multidose flu, Meningococcal , TD (thimerosal containing) might have been given along with or after HPV vaccination? Might that possibly factor in the picture along with the bacterial infections and or town toxins? Most of these girls would have been vaccinated as infant with thimerosal containing vaccine also. The synergy with aluminum and thimerosal is even worse. I wonder what metal testing was done? Did they use a chelating agent or just assume it would hang out in the blood or urine (kind of dangerous to just pull it out of the brain or kidney so I kind of doubt it...thimerosal that is). I'm sorry if anyone thinks that this type of discussion just mucks up the PANS cause, but I find it hard to overlook the possiblity that there may be some overlap. I guess watching the confusion regarding Swedo's remarks (if she said it), others talking about "why," these girls with common bacteria, and the report of an 8th child who had received the HPV vaccine, well, I needed to vent too.

Jag, Did your daughter have a challenge vaccine prior to titers for S pneumonia? I just deleted another book post, but definitely want to share this. I'm wondering what bacteria it borrowed from? bolding mine http://www.foxnews.com/health/2012/01/30/pneumonia-bug-evolves-to-evade-vaccine-study-says/ Pneumonia bug evolves to evade vaccine, study says excerpt

I came across that same site after reading this page by Kaplan. I was sorry I couldn't get the whole thing, but I found the middle class with access to medical care and military recruit training camps interesting. http://resources.metapress.com/pdf-preview.axd?code=x384735v64412238&size=largest this one too dated 1988 THE DOCTOR'S WORLD; Rheumatic Fever Cases Posing Many Puzzles As Comeback Is Feared http://www.nytimes.com/1988/03/22/science/doctor-s-world-rheumatic-fever-cases-posing-many-puzzles-comeback-feared.html?pagewanted=all&src=pm

These two pages should be helpful too Schedules http://www.cdc.gov/vaccines/recs/schedules/ All package inserts http://www.cdc.gov/vaccines/recs/schedules/

Jag, http://www.niaid.nih.gov/topics/vaccines/understanding/pages/typesvaccines.aspx#conjugate They don't say anything about the aluminum adjuvant in above excerpt read page 20 of Prevnar 13 insert here it will explain how it constructed http://www.fda.gov/downloads/biologicsbloodvaccines/vaccines/approvedproducts/ucm201669.pdf

I pray she doesn't publically "agree." This is getting so infuriating on so many levels. Now the neuros/peds will be quizzing kids/parents about traumatic events, instead of the "they'll outgrow it, relax," standby in relationship to TS too. This could end up being a giant step backwards instead of an opportunity to really learn something.

Does anyone think that Swedo might be privy to any new Cunningham info? I keep wondering about the "gene," that they were supposed to be looking for. Just my knee jerk thought. Let's say that they came up a small % of kids that would fit a true PANDAS profile, but suspect something else going on with others with movement disorders?

Now this is quite a coincidence. This is the first time I have seen this hypothesis I usually scroll this page every couple of days. http://www.vaccinationnews.com/ This headline caught my eye Conjugate vaccines may predispose children to autism spectrum disorders http://therefusers.com/refusers-newsroom/conjugate-vaccines-may-predispose-children-to-autism-spectrum-disorders/ excerpts and In regards to PANDAS specifically, maybe not mylein and maybe not autism, but an immune system which could be sensitized to carbohydrate recognition at a young age might have implications.

Priscilla, I'm glad you are finding this stuff helpful. We have had parents report that their child have had no vaccines, minimal, and even that thier child was better after recieving vaccines. Even in those instances, vax research can be helpful in understanding some things about the immune system. I just hope for parents who feel there are adverse reactions, that they can learn just enough to stand up to someone who is forcing the issue. The immune system is so complex. Jag stated it very well, as far as one possibility but then she asks how you can have a bunch of antibodies and still be immune deficient. Jag, I think you have to look at things like opsonization and the complement pathways etc. I couldn't even begin to discuss those things with any degree of intelligence. Pricilla, Hilary has a blog here. I love to watch her take these things apart (this one is on pertussis). The archives have a lot of useful entries too http://www.beyondconformity.co.nz/_blog/Hilary's_Desk/post/Battling_Immunisation_Ignorance/ EAMom, You were asking about immune suppression and how that might relate to the ability of infections taking hold. I found a page (may or may not be helpful). http://www.whale.to/vaccines/immune.html

and what happened next http://www.immunizationinfo.org/vaccines/pneumococcal-disease A heptavalent pneumococcal conjugate vaccine (PCV7 vaccine), containing the 7 most common pneumococcal serotypes causing invasive infections in children in North America was licensed in the US and recommended for routine use in infants in 2000. But it doesn't end there

EAMom, That may help but your Ped would tell you that the first year is precisely the time when your infant needs these vaccines. HIB, S pneumonia, Purtussis, Tetanus (bet even you doc would leave out hep . from paper linked above (Hilary's) bolding mine As for an adjuvant that would give a more balanced immune response, remember they are only recently even LOOKING at how alum works. They have never known howit aided in antibody production, so figuing out how to make that happen while incorporating a TH1 response, well they haven't gotten around to figuring out something that I think nature was doing pretty well to begin with. Of course you can't discount what Hilary was talking about with breast feeding in that regard either. Not really, I think "skewing," is largely referring to forcing an antibody (humoral)reponse when the inate immunity would have at least been a "first responder,' in a natural occurence. Well the thought of giving 4 vaccines at one time is really no longer in my realm of thinking. I'll try to show you why, to the best of my ability. Again from same paper Now read this http://microbewiki.kenyon.edu/index.php/Streptococcus_pneumoniae and (this is quite stunning) http://www.upi.com/Health_News/2011/11/13/Hib-vaccination-changes-epidemiology/UPI-70851321243351/ Hib vaccination changes epidemiology Now, another "Hilary" excerpt (and remember these papers of hers are older) Please read the whole thing, so nothing is taken out of context http://vran.org/about-vaccines/specific-vaccines/diphtheria-tetanus-pertussis-hib-vaccine/the-perilous-haemophilus-or-is-it-pneumonia/ excerpt